Erin Smith
Astoria, NY, United States
Erin Smith was diagnosed with celiac disease in the early 1980s, so she’s been eating gluten-free almost her entire life. Erin has a unique perspective of growing up in the gluten-free community and blogs about living — and enjoying — a gluten-free lifestyle.
Erin Smith has been writing her gluten-free lifestyle blog Gluten-Free Fun since 2007. In 2011, she launched Gluten-Free Globetrotter, a website that encourages those with celiac disease to travel the world and not be scared about eating gluten-free domestically and abroad. Erin is also the lead organizer of the NYC Celiac Disease Meetup group, a social community that has grown to over 1850 members in the 8 years she has been organizing the group.
http://glutenfreefun.blogspot.com
http://glutenfreeglobetrotter.comSee my complete profile

This is my personal decision, one that does not make me right or wrong.

I have been living with Celiac Disease for almost 33 years. For 32 of those 33 years, I have always avoided oats. I was always told by my gastrointerologist to avoid oats. I was told at an early age through my support group to avoid oats. After hearing something is off limits for three decades, you tend to believe that oats are not safe for someone living with Celiac Disease.

The idea of "gluten-free oats" is a rather new one. I believe it has only been in the last ten years or so that gluten-free oats has even entered into the picture for Celiac patients. I was intrigued but skeptical about introducing oats into my diet. Oats are questionable mainly due to the high risk of cross-contamination in production and transport. It is also believed that 10-15% of people living with Celiac also react to oats.

It is my personal decision to not eat gluten-free oats. The biggest problem I have with this decision is the nasty reactions I receive when I tell people I choose not to eat oats. At the GFAF Expo in NJ in September, I had a vendor flat out stop talking to me when I told her I didn't eat oats and couldn't eat her cupcakes. I had an Udi's demo guy tell me at Natural Foods Expo East that my reaction to oats was all in my head and I should eat their granola. I've had PR people email me and tell me that I was wrong and all gluten-free oats are safe for everyone and I MUST try their products. I've read through full-on Facebook fights in support groups that I belong to that result in people attacking strangers when they say they have a reaction to oats.

WHAT??? It is my choice to not eat gluten-free oats, people. It is my body and my reactions. Who are you to tell me otherwise?!?! What gives you the right to dictate my diet?
Ok, I'm done yelling but I really have a big problem with other people telling me what to eat or not. This is gluten-free world is complicated enough to navigate at times and having people tell me I am wrong about what I eat is just plain aggravating. Please remember that my celiac is not your celiac and I have been eating gluten-free for a VERY long time... probably longer than you have even been alive let alone diagnosed. Let me choose to not eat gluten-free oats and let me be right about my decision. Thank you!

Now, for more information about oats and the Celiac patient that will guide you in making your own personal decision:

I am with you! I don't touch oats of any kind. As you said, it's my body, my choice - regardless of what anyone wants to tell me about safety. I know how I react.It is very disappointing that personal rights and choices can't be respected because 'studies show' it should be fine.erin pickering

Super interesting! I've overall been feeling a lot better the last few weeks and I think it may be that I, for the most part, cut out GF oatmeal (something I had been eating quite a bit before). Glad you figured it out, it works for you and that you don't let anyone else dictate your diet!

Long story short, the protein in oats -- avenin -- is recognized in some celiacs as being the same as gluten! So stay the course. I learned this the hard way -- doing the research after three months of eating Van's cereal and wondering what was wrong with me! Their gf flour blend contains gf oats!

No restriction to ignorance or audacity, is there? Incredibly, some people feel they are deemed with "omniknowledge" - that's knowing all "facts" that have to apply to all bodies, in their opinion. People should know what works for their bodies and act as their own gatekeeper. Do what makes your body work at its best. Curiously, those all-knowing people don't suffer the consequences of poor choices affecting you. Maybe if they could ...

Great post, and good for you sticking to what is right for your body! My experience is different: when diagnosed coeliac a few years ago, I was told gluten-free oats were ok so I bought into gfree oats immediately as part of the glutenfree diet. The conflicting info has really confused me ever since. These days I do eat glutenfree oats but I found myself nodding with familiarity at the sheer cheek of people telling you what's good for you. I get it all the time about gluten ("but have you tried the pasta in Italy? It's finer so it would be fine for you" - arrgh hardly glutenfree is it?) Keep doing you and ignore the sceptics!

My spouse has been able to eat oats from Montana Gluten Free. They grow a variety that is low in avenin and they avoid cross contamination. He avoids gluten, casein, avenin and we're wondering about eggs. Thank you so much for getting the word out there; the diet is sometimes difficult but dealing with people is a whole 'nother issue!

I agree with you Erin. I also have to stay away from GF oats. They make me sick. Lots of gastro distress. It suprises how ignorant folks are that it still carries a cross conatmination factor and also that they don't know it is a cross reactive grain and protein. I knew I couldn't eat them, but also had a cross reactive food blood test about a year ago and confirmed that I can't eat oats. Or Teff, sorghum, millet,buckwheat and amaranth.

I totally sympathize with you. I don't eat oats either. In many countries they are not considered gf no matter what. Actually, from what I heard the UK and the US are among a minority of countries that consider oats gf.And it is a little bit of a pain to be honest. Difficult enough to say in a restaurant: please, i need gluten free, but if it has oats i can't have it either. They doon't look at you with a friendly face. And if you are with a group of people, i feel they are thinking to themselves: oh Gosh, she is really a pain, what an embarrassment!

Thanks for this post, Erin. I've had similar reactions, and I've gone back to try oats again…and again reacted. I keep thinking it's in MY head. But I feel a lot more confident it isn't knowing you've had the same reaction.

Agreed, Erin, and one of my pet peeves is that the celiac world seems to take the position that gf oats are fine since a relatively small number of us can't tolerate them. I think they should take the opposite approach: assume NONE of us can tolerate oats. If we wish to experiment, that's up to the well-informed individual. Applaud your important post. Alan O.